isn't it time we had data on the health of bipoc in canada?

the covid-19 pandemic has been a watershed event. not only for the realization that how unprepared many parts of the world were for a health crisis of such a massive scale, but also for highlighting the fact that the canadian healthcare system has long undervalued and neglected to collect race-based data.because the majority of those impacted by the pandemic have been black, indigenous and people of colour, sorely needed attention was paid and progress has finally begun. and for a country that has long dubbed itself a “cultural mosaic,” one that prides itself on being home to various communities, it’s not an exaggeration to label this a national shame — one that has even left us lagging behind the u.s., which was aware of the ways people of colour were at higher risk before most.but how did this happen?in april 2020, ontario’s chief medical officer of health david williams said race-based statistics are only collected when it is clear specific demographics are most at risk. referring specifically to the impact that covid-19 was having on specific minority groups, he said that targeting entire groups was not as effective as contact tracing.“right now, we consider our main risk groups (to be) the elderly, those with other co-morbidities, regardless of what race they are,” said williams. “regardless of race, ethnic or other backgrounds, they’re all equally important to us.”this approach, however, is ignorant to the structural inequalities long upheld in the healthcare system, including lack of access, language barriers, limited culturally sensitive care, discriminatory practices like denying certain medications or underestimating pain levels, etc. these are the same inequalities that have led to disproportionate numbers of bipoc often being the most at risk of disease and death.“canada is hesitant around collecting data, because it would prove the many different ways that it discriminates against different groups of people,” says courtney skye, who is a policy researcher at the yellowhead institute, a first nation-led research centre toronto’s ryerson university. “it would dispel ideas of ‘canada, the good,’ which is a myth that needs to be maintained by the country so that it can continue to exploit indigenous people.”consider that, in ontario alone, more than 80 per cent of indigenous people live off-reserve in urban and rural areas, but because the common assumption that most indigenous people live only in remote areas, there is no clear picture of their health status or their needs.akwasi owusu-bempah, an assistant professor of sociology at the university of toronto, adds that part of the reason behind the lack of race-based data is a fear of “targeted discrimination.” after all, race-based data has been weaponized in the past — the holocaust, for example — and is why germany and france do not collect data on race or ethnicity.but he says he is confident we are now headed toward change, as “race-based data is necessary for rates of quality.” still, he points out that access threatens the canadian facade of equality.“we’ve always liked to compare ourselves favourably to the u.s. on issues relating to race relations,” he says. “the lack of access to this data allows us to maintain many of the myths that canada is a much more equal society, even if that’s changed immensely and been exacerbated by covid.”just take one look at the numbers: toronto public health reported that covid-19 was more common in areas of the city with the highest black populations, while public health ontario found that infection rates were three times higher in areas where there were more people of colour.in a scientific american article just a few months after williams’ statement, public health specialist and physician camara phyllis jones put it simply: “race doesn’t put you at higher risk. racism puts you at higher risk. it does so through two mechanisms. people of colour are more infected because we are more exposed and less protected. then, once infected, we are more likely to die.” this is because bipoc communities have less access to quality care, are often mistreated by healthcare workers, are more likely to work jobs (in care and labour) that lead to greater exposure, and a myriad of other social disparities.racism, then, is a social determinant of health, and plenty of research over the years has showcased as much, including a pivotal 2015 review of hundreds of studies between 1983 and 2013 that examined the way racism is often associated with mental health conditions, like depression, anxiety and stress.it’s good that the conversation has begun and data collection is expanding. without this change, the disparities will only grow. and in some instances, it’s already too late.“because indigenous communities remain so marginalized, [covid has] had a significant and severe impact,” says skye, who notes that certain indigenous populations that were most impacted have been decimated, further endangering languages and cultural knowledge, while misinformation has also spread. “that makes it much harder for indigenous communities to organize, resist and survive,” she says. “it’s been heart-wrenching to try and think about how we’re moving forward and how we can think beyond what’s happened over the past two years.”in hopes of turning the tides, communities have taken the issue into their own hands.for over two decades, janet smylie — one of canada’s first métis doctors — has been working to bring a spotlight to the many racial injustices experienced by indigenous communities and to change the way the healthcare system views them. she directs well living house, the indigenous health research unit at st. michael’s hospital in toronto that is working to fill those data gaps. smylie’s belief is that communities need to manage and analyze their own health data, and skye agrees.“during the pandemic, a lot of indigenous communities realized the necessary interventions were not going to come from the state, which has proven to not be invested in prioritizing bipoc health and well-being,” says skye. “we can’t count on a time when the government is going to step in and take care of the communities that it exploits. we ultimately have to organize to protect ourselves.”attention did finally arrive at the government level when, in a letter addressed to premier doug ford, deputy premier christine elliot, and chief medical officer david williams in april 2020, 192 organizations called on the ontario government to begin collecting race-based data, because “we cannot address what we cannot measure.”soon after, the ontario government added questions regarding race and ethnicity to its covid-19 patient questionnaire, and the special investigations unit, a civilian oversight agency, announced that it would begin collecting race-based data. statistics canada also said that it would begin including details about race in its monthly employment data.but canada still has a long way to go. not only does data disaggregated by race need to be collected at all levels of government, but there needs to be effective legislation ensuring equitable public health responses and outcomes, and all of this needs to be accomplished in association with the very people and communities impacted.“if you don’t have the information to make informed decisions, then you shouldn’t be making policy decisions,” says skye. “you should be doing the work to collect the data so that the strategies you implement can actually have an impact.”sadaf ahsan is a toronto-based culture writer, editor and stereotypical middle child. she can be reached here.

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